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Just a quick note to say hi!
You deserve a big bear hug!
You're in my thoughts all the time, but especially today.
Thank you for everything!
Welcome to our community!
You are in my thoughts and prayers.
Hope you feel better soon!
Congratulations! Time for a celebration...
Happy Birthday!
Avatar universal
02/14
Just a quick note to say hi! Everything I read the idea of start a treatment and then do a Western blot thank you for the ideas
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1088527 tn?1425313375
01/12
Just wanted to say hi and see how you are doing I am still in limbo and feel like crap but going back to 1st neuro on monday its been 4 yrs since I seen him and he is my sisters MS doc and maybe after he see's how much I have declined in the years he might come to some kind of conclusion this is my last effort I dont think I can be dismissed again and carry on with the search so I keep my fingers crossed. I hope you are doing better talk to you soon

Kat
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Avatar universal
07/11
Thank you for everything! You are woderful, like I said, any info, I will gladly take.
Hope you are feeling well.
Hugs, pam
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428506 tn?1296557399
05/11
I'm glad your status shows that you're feeling a bit better.  Lyme treatment is a marathon and not a sprint, so while I hope your improvement continues, don't get discouraged if you face some backslides.  Hope you are having a restful and good weekend.
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428506 tn?1296557399
04/11
Thanks for thanking me!  I try to be of help to others since others helped me.  I appreciate you taking the time to thank me by the note and post, it means a lot to me.  Hope things are moving forward for you...
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987762 tn?1331027953
04/11
You deserve a big bear hug!

BTW You had me gob smacked with your comments about antibiotics, seriously i've already noted i have worse episodes after i've had antibiotics lol I've never been able to find a connection as to why that is, do you know? In Oz we have ticks, vets warn us to check our pets but lyme disease in humans is not even on anyone's radar, maybe we have different types of ticks, dont know but its all very interesting. Please keep in contact and up date how your doing!!!!

HUGS..............JJ  
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1088527 tn?1425313375
04/11
HiHow are you feeling? havent seen you around on the board latley any answers yet? I am still recovering from a flare on Feb 28th that has left my balance so bad that now my physical therapist wants me to use a walker. I went to see a new rheumie yesterday and she is very concerned she said the attack sounds like possible tm and she put me on predisone because she said doing something is better than nothing 80mg daily till I see her end of april . I am now out of work on temp disablity but I applied for ssdi last week she said good I was happy about that . she is running all the lupus blood work agaain and has mentioned that I may need IVIG treatments.hope all is well with you
Kat
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1088527 tn?1425313375
03/11
I told him that several neuro's say I dont have ms and he said he think I do so my primmary doc will start me on ms meds next week go figure. he said lupus doesnt fit all my symptoms but ms does so change in events for me he said starting a dmd even though there is side effects wont kill me and they are going to find me a neuro that will actually listen to me . I thought you was done with tanning at least I hope you are now that your tests are done. when will you get results? hope you get answers soon how much more can our bodies take of this crap without answers?
be well
Kat
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1088527 tn?1425313375
03/11
hey girl I just got home from the hospital just overnight stay this time I was having short of breath since friday no asthma no cough just sob so I went to doc yesterday and she sent me to er and then I was admitted the thing that got me though was when I was at the docs my feet were buzzing away and then it went up my legs and up to my chest felt like ants crawling across my chest back and forth by the thousands I was numb fromt the waist down and couldnt feel or move my legs this lasted for well over an hr and then slowly I got the feeling and was able to move my legs again. this am round of docs come in and I had to tell them what happened and he said well sounds like ms acting up again well
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1088527 tn?1425313375
02/11
did you tell the doc what happened when you wet tanning? why do you need a cpap machine? I would think they would explore why you are having breathing problems. where do you go from here? neuro or rhemie and explanation to symptoms? well hope to talk to you soon

Kat
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1088527 tn?1425313375
02/11
hi how have you been feeling? any results from the blood work?
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1088527 tn?1425313375
02/11
just got back from nuero and well she said theres nt much I an do for you I dont think its ms and it must be the lupus thats causing all the problems cog problems fatigue and nueroapthy . I will see you in a year for a follow up mri oh and maybe you need to go talk to a shrink or counsler you seem to be a little down well wtf if you couldnt do your job anymore days where you cant add 2plus 2 how would you feel oh well neuro 5 off the list I follow up with Rheumie in march oh so sine this isnt a neuro problem per se she will not support me in a claim for disability. oh well I go see my pcp on thurs and she will write me out of work .
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1088527 tn?1425313375
02/11
I know the feeling the tests mean so mush more to docs then listening to our symptoms that why I still think I have ms but I only have 6 lesions and neg spinal tap and normal vep ok so when you  are scheduled for your blood tests tan that morning and then go have it drawn . did you say you are on  disability? how did yu get it without a diagnosis? I go to the neuro tomorro so hopefully I can get some kind of answers she asked at last appointment about repeating the skin punch biopsy I guess she wants to see how far up the neuropathy has spread even though I cant feel my fingers anymore and a pin ***** test I am numb from the shoulders down but its another test and it wasnt that bad the 1st tme so I said yeah. talk to you soon
lupy sister kat
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1088527 tn?1425313375
02/11
I think you need to saty away from the tanning bed having heart symptoms not good and you know that when are you going to the rheumie?
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1088527 tn?1425313375
02/11
your still having left overs from the biopsy?  the biopsy was done on my left leg now i have weakness have developed foot drop in that leg and now I am going to pt dont know if its due to the biopsy or not. I hope you can find out soon if its lupus or not I go to my neuro tues I asked her to support me in my decison to leave my job due mostly to moderate to severe cog issues and fatigue she said she wouldnt until she see's the neuro physc report so now that she has it I hope she supports me if not my pcp will she wanted to put me out a few moths ago and I said no I just think when it comes to filing for ssdi it looks better to have a neuro back you up .when is your next appointment? take car e
Kat
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1094370 tn?1317134825
01/11
Hi

I do understand that ms could still be a possibility and I will followup with another MRI in six months. However I've already had one six month followup MRI at ucsf and my doc says this is not ms and after my next MRI if all clean will completely rule it out especially since not another single test indicates ms.   I've spent a year of my life completed consumed with worrying about ms. Im done now. Also my ms doc asked me if I'd had Lyme when he saw my MRI so that is more evidence to me that everything I'm experiencing including the lesions have been caused by Lyme. My immune system kept it in check until my gallbladder surgery and them my body just couldn't fight it anymore from the stress of the surgery. Cam you please tell me about your symptoms.
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1088527 tn?1425313375
01/11
hi I had both of those tests done and they were both negative so thats why I am not on the lupus boat yet and still clinging the the ms dingy until I get some more answers I guess I just keep floating around
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1088527 tn?1425313375
01/11
and also if you were to make a list of lupus and ms symptoms side by side which side do you end up on? mine was the MS side  talk to you soon

Kat
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1088527 tn?1425313375
01/11
Ok I agree vitamin d is a good thing but you dont know what it could be doing to you neurologically speaking. does the thumb twitch any other time or just when tanning?  when is you next ANA screening? My legs start to tingle if I get overheated so this maybe what you are feeling in your thumb . Have you noticed a rash on your face after tanning? I am pretty sure that lymes has been ruled out for me but one never knows I think when i have a autopsy done they will say yeah look she was right she had MS lol . my pcp,physical therapist, my mothers doctor lol I never saw him except when I take her to see him and my nuro phsyc doc said I have Ms so why cant these dam neuro's tell me that. Anyways what other symptoms are you having ?
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1088527 tn?1425313375
01/11
2 positive Ana's 4 months apart from each other. It was a rheumie who diagnosed me however I am still doubting the diagnosis I still think its ms but will wait and see. if you go to the lupus site they tell you to get some sun prior to blood work for Ana and if its present in your body the sun will make it go higher. do you have a rash after tanning? the tingling is weird but I have that too and if I spend alot of time outside in the sun it completley drains me . why are you tanning? you know the
risk factors and if its ms or lupus tanning isnt the best to be doing does the heat affect you? what other symptoms do you have?

Kat
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1088527 tn?1425313375
01/11
I have been diagnosed with lupus  I have been on plaquenil for 4 months now and not any better . new neuro said lupus can cause all your problems but we will see. I saw her last week to tell her I am leaving work and to ask for her help with disablity she said she wouldnt do it without the reults from the memory tests which was done a month ago she didnt get the results I told her it said moderate to severe decline from last years testing she then asked can I walk 200 ft I said no and if she would have read my pts evaluation she would have known that but I had to get up and walk without the cane  loss f balance cant walk heal to heal without falling over so I go back in 4 weeks. I hope you get to a diagnosis quickly whether its lupus,lyme or ms keep fighting to you get the answers
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667078 tn?1316000935
01/11
Just a quick note to say hi! I am glad you are getting closer to an answer. Sometimes it is complicated. With my health care advocacy I realize a big problem is we are now reduced to parts by doctors because of Specialization. You have to figure out what is wrong to get to the right specialist. God help you if you have something weird. I am feeling okay emotionally. I am riding today but the Hi is 20 and I hoping I have recovered from my diaphragm spasms. I have had to figure those out myself. You hang in there.
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667078 tn?1316000935
12/10
Just a quick note to say hi! Some times my attitude is good sometimes not. I guess because I have had bad depression my whole life I realized I just can't go there. My mood can go south in a hurry and that just does not help anyone. Hang in there.

Alex
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667078 tn?1316000935
11/10
Just a quick note to say hi! thanks for the notes. I was out of town and not keeping up with much. I am doing much better. My cats are great. You can do anything with them they are both such good boys. I hope you had an okay Thanksgiving.

Alex
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1088527 tn?1425313375
11/10
Just a quick note to say hi!
Hey how are you? whats going on? havent seen you around the forum in awhile is everything ok ? what kind of research have you been doing?

take care
Kat
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1253197 tn?1331209110
10/10
I have been away on hols for a week and just wondered if you had any further news or any further tests or results. I just wanted you to know that you are not forgotten.

Love and hugs Sarah x
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1088527 tn?1425313375
10/10
Just a quick note to say hi!


hey havent seen you post in awhile is everything ok? any new answers?
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1312898 tn?1314568133
10/10
Just a quick note to say hi!

I hope your day is not too terribly painful.  I know you are in alot of pain right now.  

Thank you for all the support you offer our community each day.  I thought I had sent a message last week but I think it disappeared in the process of trying to send it.  LOL
Just want to let you know that I hope you find answers soon so you can get back on with life soon.

Red

Red
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1253197 tn?1331209110
10/10
I shall be keeping you in my thoughts and just want to say thanks for your note...it was sweet of you to respond when you must have so much going on for you. Please let us know ho you get on and I shall pray that it is not MND.

With love and big hugs to you, Sarah xxx
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1467965 tn?1288901625
10/10
hi ya and thanks
i knew i was abnormal lol
Ruth
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1088527 tn?1425313375
10/10
Just a quick note to say hi!

hi are you feeling any better? did you call the doc? No this is a entirley new doc she is a movemnet specialist that I found myself after I came home with the tremors. She is also a Ms specialist so I hope after the evoked potentials I get some kind of answer.
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Avatar universal
10/10
Just a quick note to say hi!   I am so happy to be here. You all are so warm and welcoming and I am enjoying every minute of it!! LOL I am sure we will be chatting alot, I would love to here your story. When you have the time and you want to drop a line I am looking forward to hearing back from you. Take care, Pamela
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